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Santhera
Santhera Industry Presentation
Shabir Hasham
Global Program Lead and Head of Medical Affairs
Santhera Pharmaceuticals
Video
Sarepta Therapeutics
Sarepta Pipeline Update for the Duchenne Community
Contact Information for Patient Affairs Team: advocacy@sarepta.com
Video
Stretching Demonstration: Appropriate Exercise
Our CureDuchenne Certified Physical Therapists talk about appropriate exercise for all mobility levels.
Jennifer Wallace Valdes, PT
CureDuchenne Certified Physical Therapist
CureDuchenne Physical Therapy Program
Video
Stretching Demonstration: Lower Extremities
Our CureDuchenne Certified Physical Therapists demonstrate at-home stretching techniques.
Video
Stretching Demonstration: Upper Extremeties
Our CureDuchenne Certified Physical Therapists demonstrate at-home stretching techniques.
Video
Success at School
An interactive presentation focused on defining and building your team at school, addressing the nuances of an IEP or 504 plan for an individual with Duchenne, and a role-playing exercise on how to effectively communicate your family’s needs in a school meeting.
Sheryl Marrazzo
Duchenne Mother, Grandmother and Advocate
4 Jake's Sake | CureDuchenne
Video
The Benefits of Corticosteroids Along the Duchenne Journey
CureDuchenne is joined by Dr. Aravindhan Veerapandiyan, a Pediatric Neurologist from Arkansas Children’s Hospital, and Sheryl Marrazzo, a mother, grandmother and advocate in the Duchenne Community, for a 1-hour webinar on corticosteroids. This webinar discusses the role of corticosteroids in the Duchenne standards of care, highlights the effects of steroids after loss of ambulation, and includes a discussion on how corticosteroids play a role in the family unit over time.
Sheryl Marrazzo
Duchenne Mother, Grandmother and Advocate
4 Jake's Sake | CureDuchenne
Dr. Aravindhan Veerapandiyan
Pediatric Neurologist
Arkansas Children's Hospital
Video
The Family’s Role in Research Panel
A deep dive into the world of clinical and academic research, including input from multiple stakeholders, with the family at the center of it all.
Matthew Alexander, PhD
Assistant Professor in Pediatric Neurology and Genetics
Children’s of Alabama | University of Alabama at Birmingham
Diana Castro, MD
Associate Professor of Pediatrics, Neurology and Neurotherapeutics
University of Texas Southwestern
Joanna Kemp, BSN, RN
Senior Director of Clinical Operations | Director, CureDuchenne Link
CureDuchenne
Video
Vinculando a la comunidad a una cura
CureDuchenne Link es un centro de datos centralizado que combina datos clínicos, biomuestras y datos informados por pacientes para personas con distrofia muscular de Duchenne y Becker, así como portadores. La información y las muestras proporcionadas por los participantes están codificadas y disponibles para su uso por investigadores aprobados en todo el mundo.
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